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Thursday, December 31, 2009

JanuaryGabriella turned 4!Pediatrician heard a strong murmur.We moved into a new house!

FebruaryPaul and I celebrated our 7 year anniversary!MaggieMooDesigns turned 1!

MarchGabriella's journey began with an irregular and unexplainable EKG and Echo.

AprilI turned 27..... (eeek)Gabriella had her first heart cath and was diagnosed with Restrictive Cardiomyopathy with Myocardial Bridging.

MayWe find out Gabriella needed a transplant.We started our adventure, making the most of every opportunity!We were interviewed by KTAR radio and 2 news stations.A comedy fundraiser was held for Gabriella.A spaghetti dinner fundraiser was held for Gabriella.Our family grew stronger.

JuneGabriella rides a bike.Gabriella has her first dance recital.I leave my job.Gabriella starts with the mitral valve leakage.Our family takes us to Disneyland.Gabriella attends VBS for the first time.Anaheim Angels wear Gabriella Bands!

AugustGabriella's wish is granted by Make-A-Wish.We ran away to stay with friends in Sacramento.We had our Loma Linda intake appointment (with a side of Disney)Golf fundraiser for Gabriella.A new member of the family is born.

This year has been insane. 2009 tried it's hardest to break our spirits and knock us down, but it failed. No one is stronger in my eyes than my amazing Gabriella, and the strength she gives the people she meets is insurmountable. We go into 2010 with new armor of faith, positivity and love... and 20-10 is shaking in it's boots at the sight of us!

It shouldn't be hard for the frequent reader of our little blog to know by now that we have been insanely blessed this year, amidst difficult times. It is hard to spend much time at all focusing on negativity when so many uplifting people have been involved in our lives. It is my primary goal to be sure that all the blessings and generosity we have been shown will keep going. We are eager to be in the position to bless people as we have been blessed!!!

We had some pretty incredible people step up this Christmas and help make it as memorable as humanly imaginable for our family. It is people like them that keep the spirit that is Santa Claus alive and thriving.

We had a Special Christmas for these special Santa's. On Saturday, we let the kids open all the gifts from special friends. A large box mailed to us from California for both kids, from a family who had lived the struggle of a sick child and can stand tall today in spite of the struggles they faced. Handmade jewelry boxes, fun toys and interactive activities. So much thought and love was put into it! And a wide assortment of gifts gathered from many loving souls at Paul's work for both kids to enjoy. Clothes, toys and other goodies! Each small gift or package I watched them open, even a surprise to me what was inside, was enough to fill my heart beyond capacity. It wasn't the items themselves that gave me joy, but the generosity and compassion put into the fact that each one was picked out by someone that wanted to bless (spoil) my kiddos.

We also had one very special gift we didn't include in the Special Christmas on the 26th. It was something we chose to give the kids from Santa Claus, and never have I had anything that was more from the spirit of Santa than this. An 'anonymous' person gave my kids something we typically give them every Christmas, but couldn't afford to this year. A trip to Disneyland. Not only that, but at the Disneyland Hotel even! A combination of that Santa, a sweet friend who gathered goodies from the park to help the big reveal and numerous others who blessed us with Disney gift cards or money for Christmas, I am typing this blog from the Disneyland Hotel on New Years Eve. The kids got a box from Santa on Christmas day. Inside was 2 sweatshirts, maps to both parks, official Disneyland handmade candy canes, $25 gift cards for each kid and buttons, and a letter from Santa.

The letter read:

Dearest Gabriella and Paul Jr, Christmas 2009

What a year it has been. Gabriella, you have been such a strong little girl. You have had so many scary things happen to you, but have always been so strong and such a big girl through everything. And PJ, you have been patient with your mommy and daddy when they had to take care of your Sissy. You are such a loving little boy

I got your letters you took to the mall. PJ, I love your Mickey Mouse santa Gabriella, you said you wanted to go to Disneyland for Christmas. My elves and I have worked very hard to grant your wish. That is why I am giving you everything you need to go to Disneyland for Christmas Your Mommy and Daddy will have enough money to take you in their bank, and I have packed a box here for you with a warm sweatshirt, Disneyland maps, and your very own money to spend

Gabriella and PJ, you have both been good. Please promise me to be goodfor your Mommy and Daddy all the way until next Christmas when I come back to see you. Love each other and listen. And remember that Christmas is about Jesusand how much He loves you

Sunday, December 27, 2009

We had such an amazing Christmas this year. Everything has a new meaning to us, these days. We had fun doing so many things with each other and families. Making tamales with Paul's family, baking cookies with mine, looking at Christmas lights with my sister and brother in law, and shopping!

Saturday, December 26, 2009

We went on the 23rd to our follow-up Neurology appointment. When we met back in October with Kaplan, we expected to come in December and quit the Lovenox and schedule the MRI. This is not quite what happened....

We spoke a bit about her progress. Said that since she has retrieved over a dozen words so far, he sees no reason she won't get back a full vocabulary eventually. It might take years, but will happen. Her arm is probably close to its full potential, but we should continue to work with it and keep those muscles working and nerves firing to help them become a bit more automatic. He said she looks fantastic for being 3months post-stroke.

Dr Kaplan then went on to talk about the Lovenox. Said he didn't feel comfortable taking her off of it quite yet, because he was leaving for a 3 week vacation. He said he didn't feel comfortable if we took her off and she stroked again while he was gone. SO we are keeping her on it until mid-January. We have an appointment scheduled for his first day back in the office and will get her off the Lovenox then and schedule the MRI. This, again, delays her listing. It is looking like FEBRUARY is now a more realistic estimate.

He gave me the option of calling Cardiology and asking if they were comfortable to monitor him while he was gone, to go off Lovenox immediately. I called Cardiology and they agreed with him, that keeping on it while he is away is safest.

I have to admit, this waiting is getting ridiculous. The original delay was all the testing and scheduling being spread out. The second delay was her stroke, unavoidable. But this delay is just irritating me! I want her on this list and get her sparkly new heart so she can start the road to this new journey in life. And I want it to happen before something major happens to her heart.

(negative moment is passed)

So we will be in hopes and prayers that everything continues to be in God's timing!

Friday, December 25, 2009

Merry Christmas to all of our family, friends and blog followers we haven't had the joy of meeting yet! We are so blessed to have you all!

I hope you all have a wonderful day of family and food, and Jesus! Worship Him before you worship your gifts. Praise him before you enjoy your dinner. Keep Him the center of attention, and the guest of honor!

Luke 2:11 For unto you is born this day in the city of David a Saviour, which is Christ the Lord.

Wednesday, December 23, 2009

Through a series of unfortunate events, it has been nearly a decade since I had seen my grandfather (as well as most of my extended family). Tonight, we learned 8 days later, that he passed on December 15, 2009.

Though the last 9 years have been what they were, I cherish the first 17 years I had with him. The memories can never be taken away.

Today, I was 'coincidentally' reminiscing a memory of him with my mom on the way to the doctors. And last week I came across a letter he had written to me Christmas 1993. I know I was led to find that letter this time of year, at the time that I did, now that I am aware of his passing.

"Dearest Maggie!

You know who this letter is from. The one &only 'real' Santa.

I am so very proud of you, and you are a specialgrand daughter. Just remember in your heart all the past "real" Santa times wehad together.

Always believe in Santa as you always have & the"real" Santa will always be in your heart, every Christmas time, all through outyour life, no matter how old you & your "real" Santa get. Forever & 1day.

I love you, My Maggie

Your Santa"

I love you, 'P'. I have peace in the image I have of a healthier, younger you standing at the foot of God.

Watch Video:

Take a moment right now- start the music video above and close your eyes where you are. Picture yourself outside your body, sitting there, with your eyes shut. But instead of picturing your kids running all around, coworkers laughing, TV blaring, or any other distraction.... picture Jesus sitting by you, giving you the most loving and sincere embrace. Isn't it amazing how you now visualize yourself smiling and peaceful?

He is faithful, loving, sincere, compassionate and affectionate. And He loves you more than anything....

Today and tomorrow, as you get distracted and irritated by scrambling to finish shopping, wrapping and planning... remember this. His love for you- that's all that matters December 25th, and EVERY day.

How He Loves by David Crowder Band

He is jealous for me,Loves like a hurricane, I am a tree,Bendingbeneath the weight of his wind and mercy.When all of a sudden,I amunaware of these afflictions eclipsed by glory,And I realize just howbeautiful You are,And how great Your affections are for me.

And oh,how He loves us so,Oh how He loves us,How He loves us all

Yeah, He loves us,Oh! how He loves us,Oh! how He loves us,Oh! how He loves.

We are His portion and He is our prize,Drawn to redemption by the grace in His eyes,If grace is an ocean,we’re all sinking.And Heaven meets earth like an unforseen kiss,And myheart turns violently inside of my chest,I don’t have time to maintainthese regrets,When I think about, the way…

(We had the priveledge of attending service this past Sunday at Amadeo in Gilbert. My sister performed a dance to this song with other women and children of the church. The dance, and song, have both stuck with me this entire week so far. Thank you, Amadeo, for visualizing how much He loves us. )

John 13:7 (NIV) Jesus replied, "You do not realize now what I am doing, but later you will understand."

Third Day - TunnelFrom the album Wherever You Are

I won't pretend to know what you're thinkingI can't begin to know what you're going throughI won't deny the pain that you're feelingBut I'm gonna try and give a little hope to you

Just remember what I've told youThere's so much you're living for

Chorus:There's a light at the end of this tunnelThere's a light at the end of this tunnelFor you, for youThere's a light at the end of this tunnelShinin' bright at the end of this tunnelFor you, for youSo keep holdin' on

You've got your disappointments and sorrowsYou ought to share the weight of that load with meThen you will find that the light of tomorrowBrings a new life for your eyes to see

So remember what I've told youThere's so much you're living for

Chorus:

So remember what I've told youThere's so much you're living for

Chorus:

You've got your disappointments and sorrowsBut, I’m gonna try to give a little hope to you

Sunday, December 13, 2009

A month or more ago, I grabbed a flyer from Gabriella's cardiologists office about a Christmas party coming up. It was specifically for heart families. I took the flyer and contemplated going or not. I decided to RSVP, thinking it would be good to go and be around people who 'get it'.

Last Saturday, we loaded up the car and drove to Scottsdale for the party. I had in my mind it would be a small get-together, but when we pulled up and saw this street lined with cars, I was shocked! We went up to the door, filled out a name tag and headed to the backyard. This yard was AMAZING! You could have had a reception for 500 people back there! There was a huge patio set up with tents and tables, tons of food for the kids, crafts, play sets and a play house, and a HUGE yard and a huge pile of snow that was covered with kiddos.

After the kids played in the snow for a bit, we sat down to eat. Pizza, pickles, chips, brownies, cookies, Krispy Kreme donuts and Capri Sun juices. Perfect. LOL..... I told Paul "I hear bagpipes" and kinda chuckled it off. Sure enough in the pack of the yard comes a man playing bagpipes, and Santa Claus riding in on a horse drawn carriage! SERIOUSLY? I was just as excited as the kids were!!! Santa came and sat infront of the play house, decorated like a gingerbread house, and visited with all of the kids. He gave them all candy canes and stockings filled with goodies. It was amazing.

The best part of the whole party for me though was being around families that have struggled in one way or another the same way we have..... and will. It was nice to not feel like such an exception to the rule- normal American family: one dad, one mom, a boy and a girl, dog and house. We used to be that less than a year ago, but are no longer. I was surrounded by little ones and teens with large scars on their chest, developmental delays or disabilities, feeding tubes or oxygen.... and you know what? It was like watching an elite group of the most amazing kids God ever created. All just as deserving of the snow and Santa and junk food as any other kid, but able to have it in an event given especially for their amazing little hearts. And though I did not get to meet as many people as I wanted to, I was able to catch up briefly with a couple new but great friends there. And I can't wait to attend the Mended Little Hearts meeting next month!!!

Thursday, December 10, 2009

We saw Dr. Alhadheri for our monthly follow-up. Her heart looks stable, comparable to last month. No additional enlargement of the left atrium, and function looks about the same. He said she is still looking fantastic and lucky to be without many symptoms! The only new thing I have seen over the past month or so has been additional napping, but her body just needs the rest.

The best part of the whole visit is Gabriella GAINED weight! FINALLY! We are at 38.8lbs (she's 45" tall), and hopefully can get to 40lbs by the January visit! I can't even tell you all how proud I was! She has been on the appetite stimulant for a month now, and it seems to be doing it's job! We haven't had a meal war in a month, too, which makes me so happy!

Gabriella's words are coming, yet still slow. We are up to 11 words now! She makes a lot of the sounds, but has a hard time putting them together to make words. So when I say she has 11 words, they are 11 words she says unprompted, and in context of what they are necessary to be used for.

MoreMamaPapa (for food)BooWowMommyBabyDaddyMeMineNo

A friend asked how she was doing emotionally. Gabriella and I have an amazing way of understanding each other. Of course, it is easy for me to communicate to her because she still fully understands everything. But she can 'talk' to me and by simple gestures and the look in her eye, I know exactly what she's saying or needs. I would have to guess that MAYBE once a week there is an incident or time where I cannot understand what she is saying and am forced to tell her I don't understand (with so much regret and sadness on my end). She gets upset, but it doesn't bring her down. She is struggling in therapy because she is not one to try things. She doesn't like to try because she doesn't like to fail. And when we do convince her to try something and she gets it right, she takes OFF with it! She is the hardest kiddo her speech pathologist has worked with thus far. That's my girl, giving everyone a run for their money (including me, darned copays).

So, though this is a short post, I am glad it is! Little to no news, in our situation, is GREAT news!

Wednesday, December 9, 2009

The Make-A-Wish Foundation runs a campaign every year at Macy's for Letters to Santa. Every letter that is dropped into the North Pole box, Macy's will donate $1 to the Make-a-Wish Foundation up to $1 million!

Of course, we did our part.

Gabriella's letter (done through Pictionary movements.... in our special way of communicating)

"We have a tree. And a Mickey Mouse. And lots of decorations.

I want to go to Disneyland for Christmas. Thank you for letting me show you my Christmas list book at the mall.

Back in May, we were given a pack of passes to the Phoenix Zoo and decided there was no better time than December to go! The weather here is a fantastic 60-70 degrees and the sun is actually bearable to be in! We went on a weekday, and it was as if we had the zoo to ourselves! We probably didn't pass 25 different people in total the whole day. Aside from me being completely freaked out about the petting zoo and germies there, it was a blast. And Gabriella had the BEST time petting the stong rays! It's her favorite thing to do!

Enjoy the overload of pictures from our day! Click the monkey to view the album (thanks 'Mixed Nuts'.... I'm stealing your album sharing technique because its super convenient.... lol)

Tuesday, December 8, 2009

We were given the opportunity to attend a fundraiser for Ballet Arizona due to a kind table donation that was passed along to us by a friend! It was so nice! Lots of activities prior to the luncheon for the kids, then a great lunch and some ballet entertainment. We took my mom, sister and a friend with us.

Gammy with the kids

My sister Kara and Laurel

Arizona Science Center making dry ice bubbles

Crown Making

Prince

Me and my girl (with a halo looking reflection on her head)

That night, we headed to downtown Chandler to see the parade of lights and annual Tubleweed Tree lighting! Though it was crowded and we didn't do many activities, the kids loved the parade.

Followers of Skidmore's blog showed up, too, near-strangers who had also delivered meals during tough times and posted encouraging notes on the blog that documented Ethan's battle with a heart defect.

They call themselves "heart moms," and they never would have met if they hadn't started following one another's blogs, reading about one another's children, acting as one another's therapists when nobody else could understand what they were going through. And they comprise one of several "mommy blogs" that are connecting Valley mothers of sick or terminally ill children to people who offer comfort, help with problems and tips that lead to answers regarding new treatment.

She has 2 styles of ribbon that benefit Gabriella, and you can order what style of bow you would like- Little Cuties or Simply Swank- in your ribbon choice! If the listings are sold out, you have confusion on how to order or you would like other custom bows, just send an email to April at sweetpeaswank (at) gmail (dot) com.

She has 2 styles of ribbon that benefit Gabriella, and you can order what style of bow you would like- Little Cuties or Simply Swank- in your ribbon choice! If the listings are sold out, you have confusion on how to order or you would like other custom bows, just send an email to April at sweetpeaswank (at) gmail (dot) com.

About Me

Gabriella was diagnosed in April 2009 with a severe and irreparable congenital heart defect, Hypertrophic Cardiomyopathy. On September 25 2009, just before being listed for her new heart, she suffered a left MCA stroke, impairing her right arm abilities and taking away her speech. She was finally listed and received her heart after 97 days of waiting on May 17, 2010. Gabriellasheart.com has transitioned from a diary of our simple life to a log of Gabriella's status, and proves what a warrior she is.